Idiopathic Neuropathy treatments?
October 12, 2006 2:54 PM
My Mom might have Multiple Sclerosis, but she has Peripheral Neuropathy that doctors and EMG say isn't related to MS. It's caused disability in her legs. I know there aren't silver bullets, but can anyone suggest alternative or complementary treatments that are worth a look? More inside...
My Mom was diagnosed w/likely MS at 65 yrs of age (4 years ago), based on MRI of brain and spine. Lumbar puncture results were negative for MS and EMG on her legs indicated idiopathic neuropathy -- unrelated to MS. The disability is what's causing her the most grief, and recent MRI's showed no change in 'MS' lesions from 3 yrs. ago. Weakness in her legs, and some pain are consistent neuropathy, and Neurontin hasn't helped much. Other than the disability she's in perfect health. I've looked at all the fringe stuff -- magnets, fasts, etc. but am now querying the hive mind for any stones I may have not yet turned over. Specifically, supplements, devices, therapies??? We're trying to get in to see a neuropathy specialist at Cleveland Clinic next week, and she's seeing an MS specialist at UCLA. My gut says she may/may-not have MS -- but regardless, the disability is neuropathy, unrelated to MS. Any suggestions are *greatly* appreciated.
My Mom was diagnosed w/likely MS at 65 yrs of age (4 years ago), based on MRI of brain and spine. Lumbar puncture results were negative for MS and EMG on her legs indicated idiopathic neuropathy -- unrelated to MS. The disability is what's causing her the most grief, and recent MRI's showed no change in 'MS' lesions from 3 yrs. ago. Weakness in her legs, and some pain are consistent neuropathy, and Neurontin hasn't helped much. Other than the disability she's in perfect health. I've looked at all the fringe stuff -- magnets, fasts, etc. but am now querying the hive mind for any stones I may have not yet turned over. Specifically, supplements, devices, therapies??? We're trying to get in to see a neuropathy specialist at Cleveland Clinic next week, and she's seeing an MS specialist at UCLA. My gut says she may/may-not have MS -- but regardless, the disability is neuropathy, unrelated to MS. Any suggestions are *greatly* appreciated.
This Q & A recommends turmeric as part of treatment for MS. This Q & A says acupuncture can help relieve the pain of peripheral neuropathy. It also recommends supplementing with B-vitamins to maintain normal nerve function.
posted by La Gata at 4:24 PM on October 12, 2006
posted by La Gata at 4:24 PM on October 12, 2006
There are diets out there like The Gold Coast Cure that claim to help with MS, not sure about neuropathy though. More generally, there is a lot of information available via google about paleolithic diets, evolutionary eating, the Body Ecology Diet, etc. that restore health. Unfortunately it's hard to get someone to make the necessary dietary changes, and there isn't much, if any, in the way of scientific studies testing this stuff.
posted by Durin's Bane at 4:49 PM on October 12, 2006
posted by Durin's Bane at 4:49 PM on October 12, 2006
My Dad has Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) which was treated with intravenous immunoglobulin (IVIg), It is rather expensive and hard to come by and the effects wear off after 12 weeks.
Find a nurologist with experience in CIDP or Guillain-Barre syndrome.
posted by MCTDavid at 5:08 PM on October 12, 2006
Find a nurologist with experience in CIDP or Guillain-Barre syndrome.
posted by MCTDavid at 5:08 PM on October 12, 2006
My mom has Charcot-Marie-Tooth (CMT), a peripheral neuropathy that I have in all likelihood inherited from her. It presents as weakness in the hands, ankles, etc. She had some surgery this past summer to tighten up the tendons in her ankles (well, one -- she gets the other one done next week) so her feet don't droop and she can stop wearing the leg braces to keep from tripping constantly.
Doesn't sound pleasant and I'm sure if surgery could help your mom, her doctors would have recommended it, but thought I'd throw it out there.
posted by kindall at 7:00 PM on October 12, 2006
Doesn't sound pleasant and I'm sure if surgery could help your mom, her doctors would have recommended it, but thought I'd throw it out there.
posted by kindall at 7:00 PM on October 12, 2006
Some light weight training? My partner has MS, and was part of a study to look into the effects of strength training on MS. It had some positive results and certainly seems to have helped her.
She's into serious training now, but I think even some light weights might help. It would certainly help maintain bone density, and light exercise is good for everyone. You may need to work on convincing her that weight training is okay for women of her age.
As always, consult a professional before engaging in any of this sort of thing.
posted by tomble at 7:59 PM on October 12, 2006
She's into serious training now, but I think even some light weights might help. It would certainly help maintain bone density, and light exercise is good for everyone. You may need to work on convincing her that weight training is okay for women of her age.
As always, consult a professional before engaging in any of this sort of thing.
posted by tomble at 7:59 PM on October 12, 2006
Lyrica has helped several patients of mine who did not respond to Neurontin. Good luck.
posted by docpops at 10:07 PM on October 12, 2006
posted by docpops at 10:07 PM on October 12, 2006
And make sure she has had a B12 and MMA level drawn.
posted by docpops at 10:07 PM on October 12, 2006
posted by docpops at 10:07 PM on October 12, 2006
I had a constant familiar tremor in my right arm that has responded very well to acupuncture. YMMV, but I think it's at least worth looking at the results of googling "acupuncture peripheral neuropathy".
posted by klpage at 6:18 AM on October 13, 2006
posted by klpage at 6:18 AM on October 13, 2006
I too have idiopathic neuropathy but was never told about MS -- I don't believe I have any MS symptoms but I am curious about being pre-diabetes since everyone seems to be a candidate for that and many diabetics have neuropathy.
I would be very interested in what the Cleveland Clinic has to say - please post.
posted by jotall at 10:05 AM on October 14, 2006
I would be very interested in what the Cleveland Clinic has to say - please post.
posted by jotall at 10:05 AM on October 14, 2006
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posted by ericb at 3:27 PM on October 12, 2006